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This procedure is recognized to create a specific experiential context for both professionals implementing it and relatives supporting the patient. The aim of the current study was to explore and compare the perceptions and experiences concerning CDS. Methods : The APSY-SED study is a multicenter, prospective, and longitudinal study using a mixed-methods design. We present here the qualitative results derived from a lexicometric analysis of interviews conducted with relatives and healthcare professionals at T1 (when CDS is initiated). Results : The study included 27 relatives and 22 healthcare professionals. Relatives stressed the finality of time, experiencing sedation with ambivalence: both as a relief for the patient and a source of emotional burden for themselves. They highlighted the importance of respecting patient autonomy and wishes, with strong emphasis on communication and trust in healthcare professionals. Meanwhile, professionals focused on patient care, balancing ethical and legal considerations while upholding patient autonomy. They noted practical and procedural strains around decision-making and underscored the essential role of family communication throughout the sedation process. Discussion : These findings underscore the complexity of CDS, revealing the nuanced interplay between relatives’ ambivalence and healthcare professionals’ ethical concerns. Communication clearly emerges as a pivotal element in reconciling these perspectives, particularly around patient autonomy, family involvement, and shared decision-making. Clear legal and ethical guidelines can reduce professionals’ moral distress, and structured education programs for relatives may improve their experience of sedation care. Figures Figure 1 I- Background Continuous deep sedation (CDS) provides palliative relief from intractable suffering by inducing a state of coma until natural death occurs (1). CDS practice is highly debated, especially regarding its proper use in end-of-life care. CDS is widely used, particularly for terminally ill cancer patients, but its frequency of application varies significantly, and its definition lacks consistency (2,3). Indeed, based on previous studies regarding CDS, we can state that a significant proportion of patients for who this process is administered are patients with cancer (e.g. in France: 81% (4)). Multiple guidelines exist regarding CDS practices (5), but France is, for now, the only country to have legislated its use (6). In 2016, the Claeys–Leonetti law granted terminally ill patients who refuse life-sustaining treatment the right to receive CDS until death (French National Authority for Health (HAS), 2020) Besides, this procedure is recognized to create a specific experiential context for both professionals implementing it and relatives supporting the patient (7). Indeed, palliative care clinicians encounter ethical concerns when practicing CDS. Primarily, they report having difficulty establishing a prognosis although they know it is a selection criterion for CDS (8). Although CDS may be perceived by professionals as a « good way » to die, their emotional experience often includes a sense of responsibility and, at times, discomfort, stemming from a perception of hastening the patient’s death (9). As a result, some healthcare professionals (HCPs) may hesitate to perform CDS, reflecting the reluctance care teams to engage in this practice. This hesitation partly arises from the moral reservations held by both the teams and the institutions, who consider CDS « morally pernicious » viewing its application as more focused on ending patient lives rather than alleviating unbearable suffering (10). On the other hand, relatives are mostly appreciative of CDS as a palliative care option. As their priority is avoiding suffering at the end of life, they do not report any moral objection to this procedure (11) and believed sedation had contributed to a ‘good death’ for the patient (12). However, some express concerns regarding the patient’s wellbeing and their own. These concerns often stem from fears that the patient might wake up or continue to experience suffering during sedation, the inability to interact with the patient after the start of sedation and the burdening feeling of responsibility for the decision to start sedation (12,13). Additionally, studies highlight relatives’ questions about whether CDS may have shortened the patient’s life or whether an alternative approach might have been more appropriate. Some relatives also report a loss of agency, attributed to insufficient communication or inadequate information provided by healthcare professionals (11). Although the experiences of relatives and HCPs differ in their nature, they remain intrinsically linked by the shared context of CDS. Relatives' concerns about the patient’s comfort and potential ethical dilemmas often mirror the emotional and moral challenges faced by HCPs. For instance, 3 Dutch and Japanese studies concerning palliative sedation suggest that insufficient communication between HCPs and families not only exacerbates relatives' sense of helplessness but also increases professionals' feelings of accountability and ethical strain (13–15). Conversely, when communication is transparent and collaborative, relatives report greater reassurance, while professionals experience reduced moral distress (16). These findings underscore the mutual influence of these perspectives, emphasizing the importance of addressing both to refine the practice of CDS and alleviate the burden it imposes on all parties involved. The CDS experience among both relatives and HCPs are deeply interconnected and influence one another. Gaining insight into the dynamics between these perspectives can support the refinement of the procedure, ultimately helping to reduce the emotional and ethical burden associated with this complex process. Nevertheless, no studies have specifically examined the interaction between these perspectives, leaving a significant gap in understanding this interplay, even in France, where CDS holds a distinct status. Hence, the aim of the current study was to explore and compare the perceptions and experiences concerning CDS. A lexicometric approach allows precisely this comparison and helps to reveal underlying emotional, cognitive and relational structures. II- Methods Design and settings The current study is part of a larger research project (APSY-SED study), which investigates the psychological adjustment of relatives and healthcare professionals caring for cancer patients for whom CDS is considered. The APSY-SED study employs a mixed-methods design, combining semi-structured interviews with relatives and professionals, as well as psychological adjustment and satisfaction questionnaires. It follows a longitudinal protocol with data collection at three time points: Time 1 (the patient’s death), Time 2 (six months post-death), and Time 3 (thirteen months post-death). Conducted across ten centers in mainland France, the present study focuses specifically on the qualitative results collected at Time 1. The full study protocol has been published (17). The qualitative interviews were conducted either in person or via videoconference (Zoom software) by four researchers in psychology, trained in research with bereaved individuals and HCPs (ML, CF, LF or NR). ML is a female PhD student in psychology, LF and CF are female associate professors in psychology with extensive experience in conducting research interviews, and NR is a male researcher in psychology. The researchers had no pre-existing clinical, therapeutic or professional relationship with the participants (relatives and HCPs). The interview prompt was as follows: 'Your relative received continuous deep sedation (for relatives)/ You were involved in implementing CDS (for HCPs). Could you tell me about your experience and how it unfolded for you?' Empathetic follow-up prompts or open-ended questions were used to explore participants' responses further in a non-directive manner. Study sample Inclusion criteria consisted of: (1) patients aged ≥18 with terminal cancer (palliative phase), expected to die within hours or days, who either requested CDS or a hastened death, or who were unable to express wishes and for whom a medical decision to withdraw life-sustaining therapies had been made; (2) a collegial or multidisciplinary discussion confirming that CDS could be implemented according to French law; (3) at least one close relative (family member or friend) informed about the CDS option, with the possibility of including multiple relatives for the same patient; (4) at least one healthcare provider (HCP) involved in the patient’s care who agreed to participate; (5) HCPs (physicians, nurses, assistant nurses) directly engaged in the CDS procedure, defined as prescribing CDS (physicians) or providing daily care (nurses, assistant nurses); and (6) provision of non-objection by each participant upon reading the specific information letter. Exclusion criteria were: (1) relatives with a psychiatric disorder significantly distorting perception of reality (as determined by clinical staff); (2) insufficient fluency in French to complete questionnaires and research interviews; (3) patient death occurring before CDS implementation; (4) non-implementation of CDS despite a request; and (5) relatives under guardianship, deprived of liberty by judicial or administrative decision, or unable to provide non-objection. The contact details of relatives and HCPs from ten French palliative care unit involved in the APSY SED main study, were provided to the researcher by the physician in charge of the recruitment inside the unit. The participants received directly by the physician or were sent an e-mail with an information letter detailing the three times of the study and the first questionnaire (Time 1). They were then invited by e-mail or phone call to participate in an interview about their experience. Among the 26 HCPs and 51 relatives included in the study, qualitative interviews were conducted with 22 HCPs and 27 relatives. The interviews took place between January 2022 and June 2024 and lasted between 20 and 80 minutes. At the start of the interviews, participants were asked where they were (home or at workplace). Audio recordings were made using Zoom or a recorder. Data analysis The recordings were transcribed and pseudonymized by ML. A lexicometric analysis was conducted using the Iramuteq software which is designed for analyzing text. Lexicometric analysis is the method of choice for comparing and contrasting two groups based on their discourse. This analysis is based on the statistics of the corpus, meaning the study of the frequency of words and the relationships between them. The software first performs lemmatization, a process that reduces words to their base form (for example, 'dying' and 'dies' become 'die'). The corpus is then divided into Units of Context (UC), which are segments of text defined by the frequency of words and punctuation marks (18). For the analysis, we first studied the statistics of the corpus, specifically focusing on the relative frequency of word occurrences. This allowed us to quantify how often specific words and themes appeared in the interviews, helping to identify patterns and the significance of certain UCs in the discourse. By examining these frequencies, we gained insights into the most prevalent topics addressed by the participants. Lexical specificity analysis was conducted using the Chi² test, with results standardized into Z-scores (adjusted residuals). These scores indicate the over- or under-representation of words within each group. Positive values denote a significant overuse of a term in a specific group, while negative values indicate its under-representation compared to the other group. A Z-score absolute value greater than 2 suggests a statistically meaningful difference in word usage. Then, an analysis of specific forms was done using the Chi² test to determine whether certain words were significantly associated with a specific group. The Chi² values indicate the strength of association between a word and a group, while the p-value assesses the statistical significance of this association, with p < .05 considered the threshold for significance. (19). Finally, hierarchical clustering was performed using Ward’s method to group words according to their similarity patterns ((20). In addition, a similarity analysis, measured by the co-occurrence index, was used to assess the relationships between words and which words are used together and their respective classes. The similarity analysis produces a dendogram illustrating the closeness of words in terms of content or language use. This approach allows us to examine the links between words and identify key words clusters in the data (19). Lastly, we used the Descending Hierarchical Classification (DHC) method to generate word classes, where each class represents a cluster of words frequently occurring in the same or similar sentences spoken by participants. This method identifies clusters of words that are strongly associated with each other (19). The Consolidated Criteria for Reporting Qualitative Research (21) were used. Ethics approval The study received approval from a French Ethics Committee on 14/12/2021 (ID-RCB :2021-A03042-39), in accordance with the Declaration of Helsinki. All participants received information about the purpose and the procedures of the study before participating in this study. III- Results 1. Sociodemographic Data The study included 27 relatives (15 men, average age 50.1 years) and 22 healthcare professionals (15 women, average age 36.9 years), representing 53% of the total relatives sample and 85% of the total HCP sample. Participation in the qualitative interviews was voluntary rather than mandatory. Three interviews were subsequently deemed unusable, leaving the remaining interviews for final analysis. analysis Among the relatives, there were 18 adult children, 6 spouses of patients and 3 siblings. The professional group comprised 8 physicians and 6 nurses from five French hospitals (see table 1). Table 1 - Sociodemographic Characteristics of the Study Participants Characteristic Relatives (n = 27) Healthcare Providers (n = 22) Gender 15 7 Male Female 12 15 Average Age (Years) 50.1 (SD = 15.03) 36.9 (SD = 11.7) Relationship To Patient / Profession 19 — Children Spouses 6 — Siblings 3 — Physicians — 8 Nurses — 6 Nursing Assistant — 5 Institutional Affiliation — 5 palliative care centers SD = standard deviation 2. Statistical analysis – frequencies of used forms · Relatives The lexicometric analysis of interviews with relatives highlighted frequent references as indicated by high occurrences of terms. The word “moment” (used 301 times) emphasizes the temporality aspect of CDS which is experienced as a specific period of time “our last moment” who can be perceived as “serene” or “extremely difficult”. The word “physician” (used 295 times) frequently appeared in participants’ discourse, referencing communication between relatives and healthcare professionals, as well as the relationship with physicians, often described as “trusting the physician.” The verb “to speak” (used 263 times) highlighted the central role of communication in the context of sedation, with contrasting nuances: 'difficulty discussing it' versus “we had discussed it enough”. The term “suffering” (used 226 times) was used to describe the patient’s condition prior to sedation, such as 'my mother’s state of suffering,' and to frame sedation as a means to address it: “alleviate their suffering”, “relief from suffering”. The word “sedation” (used 223 times) was often referenced as a request made by the patient—'she requested sedation'—and described as both a “relief” and “a form of violence.” Finally, the word “choice” (used 115 times) emphasized that this procedure originates from the patient’s decision—"it was their choice”—and highlighted the importance of respecting this decision: “I respected their choice". · HCPs The statistical analysis of the corpus highlights a predominant focus on the patient rather than on their relatives. Specifically, the term “patient” appears 236 times, placing the patient at the center of healthcare professionals’ discourse. The patient is directly associated with terms such as “sedation” (178 occurrences) and “request” (102 occurrences). However, this process is not without its challenges for professionals, as reflected by the use of the term “difficulties” (57 occurrences). Furthermore, terms like “alinéa” in french (“paragraph”) (40 occurrences), referencing the Claeys-Leonetti law, as well as “procedure,” “rights” (24 occurrences), and “law” (24 occurrences) are frequently mentioned. This underscores the healthcare professionals’ strong adherence to the legal framework governing CDS. 3. Lexical Specificities Analysis: differences between relatives and HCPs Table 2: Lexical Specificities Analysis: Word Usage Differences Between Relatives and Healthcare Professionals Forms Relatives HCPs Suffering 4.9556 -4.9556 To want 4.7742 -4.7742 Agreement 4.4827 -4.4827 Decision 4.4096 -4.4096 To speak 4.0921 -4.0921 To choose 3.4479 -3.4479 Wish 3.2412 -3.2412 Relentlessness 2.9307 -2.9307 Patient -153.0255 153.0255 Sedation -35.8805 35.8805 “Collégiale” (meeting) -17.2542 17.2542 Difficulty -13.8262 13.8262 Euthanasia -11.6981 11.6981 Paragraph (ref. law) -10.1787 10.1787 Intention -6.3008 6.3008 Legal -6.0839 6.0839 Complicated -0.9681 0.9681 Pain -0.9579 -0.9579 Time -0.9427 0.9427 Distress -0.6956 0.6956 Instant -0.6434 0.6434 Phase -0.6398 0.6398 Exchange 0.4051 -0.4051 Process 0.4471 -0.4471 Note: Bolded entries indicate the group (Relatives or HCPs) in which each word is significantly overrepresented. The z-scores (in italics) reflect the strength of this association. The analysis reveals notable lexical differences between the discourse of relatives and HCPs (Table 2). Certain words are strongly associated with relatives, reflecting their concerns, while others are predominantly used by HCPs, indicating their professional priorities. Additionally, some terms are relatively balanced and shared by both groups. Relatives frequently use terms such as "suffering" , "to want" , "agreement" , "decision" , and "to speak" . These words suggest a focus on the pain of the patient, the expression of a choice to sedate, and active participation in decision-making processes. For example: “We wouldn’t let her suffer” or “We talked about it together and we always supported his decision.” The recurrent use of "to choose" and "wish" further highlights the importance of autonomy and emotional considerations in the relatives' discourse. The mention of "relentlessness" (referring as "therapeutic obstinacy") indicates a critical perspective on perceived excessive medical interventions : “He did not want therapeutic obstinacy”. Conversely, healthcare professionals employ a more technical and clinical vocabulary. Words such as "patient" , "sedation" , "collegial" , and "euthanasia" are central to their discourse. These terms reflect their professional responsibilities and the medical-ethical frameworks within which they operate. For instance: “we do everything in a collegiate procedure”, "It's not euthanasia at all", and "I had trouble seeing the difference between sedation and euthanasia" The frequent use of "difficulty" , "intention" , and "legal" suggests that professionals grapple with complex ethical, procedural, and legal dimensions when addressing end-of-life care. Words like "alinéa" (a legal term) underline the formal context of their discussions “it puts me in difficulty", “clarified the intention”, “it’s not my intention” and “"meet the legal framework" Interestingly, some words are shared by both groups, albeit with slight variations in frequency or context. Terms like "pain" , "time" , "distress" , and "exchange" appear in both discourses, indicating common ground. These words reflect shared concerns about the patient's experience and the relational dynamics between families and professionals. For example: A relative “she started to be in pain” / a HCP “the patient’s pain” and A relative “to have time” / an HCP “we took the time” Overall, the ward methods is indicating that the lexical distance between the two classes is close to zero (0.172). 4. Specific Forms Associated with Relatives and Healthcare Professionals Table 3: Analysis of Specific Forms by Group Forms Chi2 P value Relatives Fatigue 24.525 <.0001 Agreement 35.148 <.0001 To speak 49.17 .002 HCPs Patient 145.633 <.0001 Sedation 92.645 <.0001 Collégiale 22.126 <.0001 Difficulty 30.481 <.0001 Euthanasia 45.719 <.0001 Paragraph (ref. law) 14.459 .00041 Intention 8.293 .00397 Legal 14.546 .00013 Complicated 4.599 .03 Note: Only words with a statistically significant association (p < .05) to one of the two groups are listed. The Chi² value reflects how strongly each word is linked to either Relatives or HCPs. Several terms are particularly characteristic of the discourse of relatives such as "Fatigue" (Chi² = 24.525, p < .0001), highlighting its centrality in their vocabulary. "Agreement" (Chi² = 35.148, p < .0001) and "To speak" (Chi² = 49.17, p = .002) emerges as highly specific terms, reflecting themes of communication and consensus. Healthcare professionals, on the other hand, use a distinct set of terms more frequently. "Patient" is by far the most specific to this group, with an exceptionally high Chi² value (145.633, p < .0001), underscoring its importance in their discourse. Words such as "Sedation" (Chi² = 92.645, p < .0001) and "Collégiale" (Chi² = 22.126, p < .0001) point to professional practices and collaborative decision-making. Legal and ethical concerns are reflected in terms such as "Euthanasia" (Chi² = 45.719, p < .0001), "Paragraph" (referring to specific legal contexts, Chi² = 14.459, p = .00041), "Intention" (Chi² = 8.293, p = .00397), and "Legal" (Chi² = 14.546, p = .00013). The word "Complicated" (Chi² = 4.599, p = .03) also highlights the complexity of professional decision-making. (Table 3) 5. Relatives’ similarity analysis The similarity analysis revealed several words clusters shown in the dendogram (Figure 1): 1. Temporality (green) : Discussions centered on time management and perceptions of care delivery. 2. Suffering and Sedation (purple) : Narratives focused on end-of-life practices and the alleviation of suffering. 3. Decision-Making (light blue) : Relatives emphasized the complexity of medical decisions and their involvement in these processes. 4. Collective Organization (blue) : The role of healthcare teams and logistical considerations were recurrent themes. 5. Family Relationships (red) : Emotional dynamics and caregiving within the family were highlighted. 6. Daily Planning (pink) : Relatives addressed the day-to-day management of care. 7. Death and Broader Reflection (yellow) : Philosophical and subjective discussions about mortality and end-of-life care emerged. 6. Healthcare Professionals’ descending hierarchical classification (DHC) The DHC identified three key thematic areas for healthcare professionals. First, Medical and Team Decision-Making: Professionals emphasized the collective nature of the process, with frequent references such as “sedation is a team procedure” and “the collegial procedure really helps.” These statements reflect their focus on adhering to legal frameworks and respecting patients' rights. Then, Family Involvement and Communication: Another central theme revolved around communication with families and involving them in decision-making. Examples include statements like “we talked to the family” and “accompany the family,” which highlight the professionals’ acknowledgment of the relatives’ emotions, as seen in quotes such as “the family was ready” and “it’s hard for the family.” Finally, CDS and End-of-Life Challenges: The final theme focused on continuous deep sedation (CDS) itself and broader end-of-life aspects. Sedation was often linked to the “patient’s desire to die,” while healthcare professionals expressed the emotional and ethical burden it placed on them, with remarks like “it puts me in too much difficulty.” Additionally, professionals noted that patients sometimes requested “active aid in dying,” which was associated with terms such as “difficulties” and “prohibited.” IV- Discussion This study explores the experiences of CDS from the perspectives of cancer patients' relatives and HCPs. Using lexicometric analysis, we examine their perceptions, interactions, and emotional responses. Understanding these subjective experiences is crucial for adapting care environments to both individual and shared needs. Regarding the relatives’ discourse, several key themes emerged. Temporality was a significant part, highlighting the importance of the last moment being lived. Ambivalence toward sedation was also central, as relatives viewed it as both a relief and a source of emotional pain for them. Participation in decision-making was another major theme, with a strong emphasis on paying respect to patient’s autonomy and wishes. Communication with HCPs played a crucial role, as trust and open dialogue were essential components of their experience. HCPs, on the other hand, demonstrated a strong focus on the care of the patient. Their role involved balancing patient autonomy with ethical and legal frameworks. Organizational and procedural concerns, alongside ethical strain, were prominent in their preoccupations, with decision-making often described as challenging. Communication with families was also a key area of focus, highlighting its importance in the overall process. Our findings align with existing literature. CDS is perceived as a means to ensure a “good death” (11,12). Indeed, CDS has been associated with fewer unresolved issues, or "unfinished business". The sedation process allows relatives to anticipate the moment of death and a ritualization of goodbyes. Resolving "unfinished business" can be seen as a way for relatives to address disrupted attachment bonds, allowing them to process the loss within a framework of emotional stability and continuity. This may support meaning-making by helping relatives process death through reconstructing a narrative that integrates the loss into a broader existential framework (22). This process can also be understood in light of anticipating death, a phase in which relatives become acutely aware of the patient’s decline and emotionally prepare for the loss while still maintaining a connection with the dying person (23). The ability to prepare for death has been shown to significantly impact post-loss adjustment (24), and CDS, by providing a structured end-of-life period, might play a role in this anticipatory grieving process. Moreover, emphasizing patient autonomy enables relatives to integrate the patient’s wishes into their narrative of the dying process, fostering a sense of coherence and respect to patient identity. The relief provided by CDS supports meaning-making by alleviating not only the patient’s suffering but also relatives’ emotional burden, helping them construct a narrative of humanization and care around the patient’s final moments. Hence, CDS might influence grief processing by shaping how families experience and integrate the loss. For relatives, our results show that temporality is deeply rooted in subjective and emotional experiences, with a strong emphasis on the significance of the “last moments.” This aligns with existing literature. For example, (25) noted that “several relatives mentioned that the use of palliative sedation provided them with the time necessary to prepare for the loss of their loved one. They knew that death was near and could say goodbye to the patient in a conscious way.” The focus on "last moments" highlights the importance of seeking meaningful closure to preserve these connections. As found in the literature, this sense of anticipation also leads to a heightened need for emotional engagement with the dying person. As the patient becomes sedated and verbal communication ceases, relatives often reinforce their dedication, intensifying the relationship through non-verbal presence, physical touch, and the completion of end-of-life relational tasks such as reviewing life events, sharing meaningful experiences, and resolving unfinished conflicts (23). Conversely, relatives reported tensions surrounding sedation duration, which could be perceived in conflicting ways as either long and exhausting or as calming and appropriate. When sedation was considered too prolonged, relatives often described feelings of fatigue and emotional exhaustion (26). Imai et al., (2022) observed that families of patients who underwent CDS frequently expressed concerns that the dying process had been unnaturally extended. However, when the process felt too rapid, fears of euthanasia arose, reflecting the delicate emotional balance associated with timing. This paradox resonates with findings that, while terminality is expected, it is often still perceived as sudden and emotionally overwhelming (23). Indeed, some relatives ultimately experience a sense of relief after a prolonged and emotionally intense caregiving period, recognizing that death has ended both the patient’s suffering and their own burden. Our findings on HCPs also align with existing literature, as the preoccupation with decision-making is well-documented in the literature. Brinkkemper et al., (2011) found that 18.5% of HCP respondents believed that CDS was not started at the right moment, but either too soon or too late. Furthermore, Guité-Verret et al., (2024, p6) highlighted the weight that clinicians place on prognostic accuracy: “Clinicians recognized the importance of making an accurate prognosis as a crucial aspect of providing quality continuous sedation, but errors in timing, whether administering continuous sedation too early or too late, can result in a sense of professional and, to some extent, personal failure”. This difficulty can also be partly explained by the moral and ethical complexity of the practice, particularly the need to balance patient autonomy with the legal and ethical frameworks that govern end-of-life care. One of the major concerns for HCPs, as observed in this study and others, is the need to clearly distinguish CDS from physician-assisted death (28–30). This distinction is critical, as CDS is designed as a palliative intervention aiming at reducing refractory suffering, rather than a life-ending measure, and HCPs may feel heightened pressure to ensure that their actions remain within legal boundaries and ethical standards. The Claeys-Leonetti French law (2016) offers a legal framework that HCPs rely on to clarify their intentions and guide their actions, which helps mitigating ethical uncertainty. HCPs may experience cognitive dissonance (31), when their internal desire to alleviate suffering (8) interacts with societal or institutional expectations regarding the acceptability of CDS. Adhering strictly to laws and guidelines can reduce this dissonance, providing a sense of moral justification and coherence to their actions. In this sense, the legal framework serves as a moral anchor, helping professionals align their actions with both their personal values and professional responsibilities (30). The theme of “suffering” is prominently shared by both relatives and healthcare professionals (HCPs), though approached from distinct perspectives. For relatives, alleviating the patient’s suffering emerges as a central concern, often representing a turning point during the dying process. This aligns with the existing literature, where sedation is perceived as a relief (32). However, relatives’ experiences of sedation also evoke ambivalence, with it being described as both a relief and a form of violence, reflecting the emotional burden associated with this procedure. A study found that relatives expressed feelings that the trajectory of sedation was deeply distressing for them (26). Yet, positive aspects were also highlighted in the literature, including the opportunity to prepare for the patient’s death, involvement in decision-making, and the improvement in the patient’s condition (32). For HCPs, their ambivalence is evident in their strong reliance on ethical guidelines and their need for absolute certainty that CDS is appropriate. Their framing of CDS as a necessary medical response reflects their procedural focus, but it also underscores their shared goal of alleviating suffering. However, while HCPs emphasize CDS as a last-resort measure (33), relatives often seek immediate relief for the patient, leading to potential tension. Bridging these perspectives requires clearer communication and, if the patient consents, earlier integration of relatives into the decision-making process. Additionally, the importance of the relationship with HCPs is consistent with studies showing relatives’ strong need for guidance and appreciation of the support offered by HCPs (14,26). Indeed, communication and relational tact seem to be major prerequisites for peaceful CDS. In fact a study focusing on relatives’ concerns showed that their dissatisfaction was mainly associated with the information that was being provided (Van Dooren et al., 2009). Attachment theory may provide insight into this need, as the end-of-life context can activate the attachment system. In such situations, relatives seek secure relationships with HCPs, who can provide a sense of safety and support. A notable strength of this research is its dual focus on the perspectives of both family members and healthcare professionals, allowing for richer, comparative insights into how each group experiences CDS. The lexicometric approach quantifies language use, providing a nuanced and measurable view of participants’ discourse about sedation. By coupling a quantitative analysis of word usage with a qualitative examination of participants’ subjective experiences, the study thoroughly captures and contrasts the viewpoints of all parties involved. The present study presents several limitations. Although the relatives in this study held diverse roles (e.g., spouses, siblings), most were children of the patients, which limits the sample’s diversity and representativeness. One limitation of the lexicometric analysis is that it remains very close to the text, focusing primarily on word frequency and co-occurrence patterns rather than deeper interpretative meaning. While this method provides valuable insights into linguistic structures and recurring themes, it does not fully capture the complexity of participants' experiences or the nuanced ways in which they construct meaning. To gain a more in-depth understanding, complementary approaches such as thematic analysis (34,35) or interpretative phenomenological analysis (IPA, Smith & Osborn, 2003) could be employed. These methods would allow for a more detailed exploration of the underlying concepts, subjective experiences, and sense-making processes articulated by participants. To improve the experience of relatives facing CDS, it seems essential to develop clear and structured programs that provide comprehensive explanations of what sedation entails, how it works, and what to expect throughout the process (11). In the face of unavoidable uncertainty, prioritizing communication could help alleviate potential distress related to misconceptions or unanswered questions. Moreover, psychological support should be integrated throughout the entire CDS process, not as an isolated intervention, but as a resource embedded in the daily lives of relatives. This means offering flexible, accessible, and time-efficient support that does not add an extra burden or disrupt their routine. Instead of lengthy, formal sessions, means of support could include short, regular check-ins, personalized guidance adapted to their needs, and opportunities to express concerns in a way that feels natural and non-intrusive (37,38). By combining structured education with embedded psychological help, we can ensure that relatives feel both informed and emotionally supported, ultimately improving their coping process and overall experience during this challenging time. For HCPs involved in CDS, providing clear legal and ethical guidance is crucial to enlighten their decision-making process and reduce moral distress (39). As the Claeys-Leonetti law allows, structured frameworks should deliver precise criteria for CDS implementation, clarifying the boundaries between palliative sedation and other end-of-life practices. This would help professionals feel more secure in their role and ensure consistency in care delivery. Additionally, team-based support should be reinforced, including intervision sessions where professionals can openly discuss complex cases, share uncertainties, and reflect on their experiences in a collaborative and non-judgmental environment (40). These discussions could help mitigate the emotional burden associated with CDS and prevent burnout. Declarations Ethics approval and consent to participate: Oral and written information about the study was given to each participant. This study was approved by the French Ethics Committee on 14/12/2021 (ID-RCB :2021-A03042-39). In accordance with French regulations, participants were informed about the study and data collection procedures. Non-opposition to participation was obtained from all participants, and written informed consent was not required for this type of non-interventional study. Availability of data and materials: Data are available on reasonable request. Competing interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. Funding: This study is funded by the French National Cancer Institute (INCa SHS 2020) Authors' contributions: LF is responsible for study design and participated in data collection and in manuscript preparation. CF participated in study design, data collection and manuscript preparation. ML is responsible for data collection and analysis and manuscript preparation. AP, AE, IJ, CP, CM and NR participated in data collection and manuscript preparation. Acknowledgments : The authors would like to thank all the patients, their relatives, physicians and other healthcare workers involved in this research. References Cherny NI, Radbruch L. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 1 oct 2009;23(7):581‑93. Abarshi E, Rietjens J, Robijn L, Caraceni A, Payne S, Deliens L, et al. International variations in clinical practice guidelines for palliative sedation: a systematic review. BMJ Support Palliat Care. 1 sept 2017;7(3):223‑9. Prampart S, Huon JF, Colpaert A, Delavaud C, Nizard J, Evin A. Deep continuous sedation at the patient’s request until death in a palliative care unit: retrospective study. BMJ Support Palliat Care. 21 févr 2024;14(1):60‑4. Serey A, Tricou C, Phan-Hoang N, Legenne M, Perceau-Chambard É, Filbet M. Deep continuous patient-requested sedation until death: a multicentric study. BMJ Support Palliat Care. mars 2023;13(1):70‑6. Surges SM, Brunsch H, Jaspers B, Apostolidis K, Cardone A, Centeno C, et al. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study. Palliat Med. févr 2024;38(2):213‑28. Horn R. The « French exception »: the right to continuous deep sedation at the end of life. J Med Ethics. mars 2018;44(3):204‑5. Locatelli M, Fasse L, Lacombe C, Flahault C. Deep Continuous Sedation Until Death and Experience of Relatives and Healthcare Providers: A Systematic Review. J Pain Symptom Manage [Internet]. 11 févr 2025 [cité 11 mars 2025]; Disponible sur: https://www.sciencedirect.com/science/article/pii/S0885392425000466 Guité-Verret A, Boivin J, Hanna AMR, Downar J, Bush SH, Marcoux I, et al. Continuous palliative sedation until death: a qualitative study of palliative care clinicians’ experiences. BMC Palliat Care. 18 avr 2024;23(1):104. Vieille M, Dany L, Coz PL, Avon S, Keraval C, Salas S, et al. Perception, Beliefs, and Attitudes Regarding Sedation Practices among Palliative Care Nurses and Physicians: A Qualitative Study. Palliat Med Rep. 2021;2(1):160‑7. Vissers S, Dierickx S, Robijn L, Cohen J, Deliens L, Mortier F, et al. Physicians’ Experiences and Perceptions of Environmental Factors Affecting Their Practices of Continuous Deep Sedation until Death: A Secondary Qualitative Analysis of an Interview Study. Int J Environ Res Public Health. 30 avr 2022;19(9):5472. Jonker LA, Heijltjes MT, Rietjens JAC, van der Heide A, Hendriksen G, van Delden JJM, et al. Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives. Health Expect. 2024;27(1):e13869. Bruinsma SM, Brown J, van der Heide A, Deliens L, Anquinet L, Payne SA, et al. Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries. Support Care Cancer Off J Multinatl Assoc Support Care Cancer. déc 2014;22(12):3243‑52. Bruinsma SM, van der Heide A, van der Lee ML, Vergouwe Y, Rietjens J a. C. No Negative Impact of Palliative Sedation on Relatives’ Experience of the Dying Phase and Their Wellbeing after the Patient’s Death: An Observational Study. PloS One. 2016;11(2):e0149250. Imai K, Morita T, Mori M, Yokomichi N, Yamauchi T, Miwa S, et al. Family experience of palliative sedation therapy: proportional vs. continuous deep sedation. Support Care Cancer. janv 2022;30(5):3903‑15. Lokker ME, Swart SJ, Rietjens JAC, van Zuylen L, Perez RSGM, van der Heide A. Palliative sedation and moral distress: A qualitative study of nurses. Appl Nurs Res. avr 2018;40:157‑61. Anderson RJ, Bloch S, Armstrong M, Stone PC, Low JT. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliat Med. 1 sept 2019;33(8):926‑41. Fasse L, Roche N, Flahault C, Garrouste-Orgeas M, Ximenes M, Pages A, et al. The APSY-SED study: protocol of an observational, longitudinal, mixed methods and multicenter study exploring the psychological adjustment of relatives and healthcare providers of patients with cancer with continuous deep sedation until death. BMC Palliat Care. 5 déc 2022;21(1):217. Montalescot L, Lamore K, Flahault C, Untas A. What is the place of interpretation in text analysis? An example using ALCESTE® software. Qual Res Psychol. 2 avr 2024;21(2):200‑26. Ratinaud P, Marchand P. Application de la méthode ALCESTE à de ”gros” corpus et stabilité des ”mondes lexicaux” : analyse du ”CableGate” avec IRaMuTeQ. In: 11èmes Journées internationales d’Analyse statistique des Données Textuelles [Internet]. Liège, Belgium; 2012 [cité 13 mars 2025]. p. 835-844 (en ligne : http://lexicometrica.univ-paris3.fr/jadt/jadt2012/Communications/Ratinaud,%20Pierre%20et%20al.%20-%20Application%20de%20la%20methode%20Alceste.pdf). Disponible sur: https://hal.science/hal-03695856 Murtagh F, Legendre P. Ward’s Hierarchical Clustering Method: Clustering Criterion and Agglomerative Algorithm. 27 nov 2011; Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 1 déc 2007;19(6):349‑57. Neimeyer RA. The language of loss: Grief therapy as a process of meaning reconstruction. In: Meaning reconstruction & the experience of loss. Washington, DC, US: American Psychological Association; 2001. p. 261‑92. Coelho A, Barbosa A. Family Anticipatory Grief: An Integrative Literature Review. Am J Hosp Palliat Med. sept 2017;34(8):774‑85. Hasdenteufel M, Quintard B. Psychosocial factors affecting the bereavement experience of relatives of palliative-stage cancer patients: a systematic review. BMC Palliat Care. 30 nov 2022;21(1):212. Bruinsma SM. The experiences of bereaved relatives wiith palliative sedation and other end-of-life practices. [Rotterdam]: Erasmus Universiteit Rotterdam (EUR); 2015. Van Dooren S, Van Veluw HTM, Van Zuylen L, Rietjens JAC, Passchier J, Van Der Rijt CCD. Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer. J Pain Symptom Manage. sept 2009;38(3):452‑9. Brinkkemper T, Klinkenberg M, Deliens L, Eliel M, Rietjens JAC, Zuurmond WWA, et al. Palliative sedation at home in the Netherlands: a nationwide survey among nurses: Palliative sedation at home. J Adv Nurs. mars 2011;67(8):1719‑28. Auffray L, Mora P, Giabicani M, Engrand N, Audibert G, Perrigault PF, et al. Tension between continuous and deep sedation and assistance in dying: a national survey of intensive care professionals’ perceptions. Anaesth Crit Care Amp Pain Med. févr 2024;43(1):101317. Koksvik GH, Richards N, Gerson SM, Materstvedt LJ, Clark D. Medicalisation, suffering and control at the end of life: The interplay of deep continuous palliative sedation and assisted dying. Health Interdiscip J Soc Study Health Illn Med. déc 2020;26(4):512‑31. Lucchi E, Milder M, Dardenne A, Bouleuc C. Could palliative sedation be seen as unnamed euthanasia?: a survey among healthcare professionals in oncology. BMC Palliat Care [Internet]. juill 2023;22(1). Disponible sur: http://dx.doi.org/10.1186/s12904-023-01219-z Festinger L. A theory of cognitive dissonance. Stanford University Press; 1957. xi, 291 p. (A theory of cognitive dissonance). Bruinsma S, Rietjens J, van der Heide A. Palliative Sedation: A Focus Group Study on the Experiences of Relatives. J Palliat Med. avr 2013;16(4):349‑55. Swart SJ, van der Heide A, van Zuylen L, Perez RSGM, Zuurmond WWA, van der Maas PJ, et al. Continuous Palliative Sedation: Not Only a Response to Physical Suffering. J Palliat Med. janv 2014;17(1):27‑36. Braun V, Clarke V. Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG). Palliat Med. juin 2024;38(6):608‑16. Paillé P, Mucchielli A. L’analyse qualitative en sciences humaines et sociales [Internet]. Armand Colin; 2012 [cité 12 févr 2025]. Disponible sur: https://shs.cairn.info/l-analyse-qualitative-en-sciences-humaines--9782200249045 Smith JA, Osborn M. Interpretative phenomenological analysis. In: Qualitative psychology: A practical guide to research methods. Thousand Oaks, CA, US: Sage Publications, Inc; 2003. p. 51‑80. Hill R, Dempster M, Donnelly M, Mccorry N. Improving the wellbeing of staff who work in palliative care settings: A systematic review of psychosocial interventions. Palliat Med. 1 oct 2016;30:825‑33. Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients. J Palliat Med. juin 2012;15(6):696‑702. Ziegler S, Merker H, Schmid M, Puhan MA. The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals’ emotional well-being: a systematic review. BMC Palliat Care. 8 mai 2017;16:30. Anquinet L, Rietjens J, van der Heide A, Bruinsma S, Janssens R, Deliens L, et al. Physicians’ experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life. Psychooncology. mai 2014;23(5):539‑46. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 28 Oct, 2025 Read the published version in Supportive Care in Cancer → Version 1 posted Editorial decision: Revision requested 05 Aug, 2025 Reviews received at journal 01 Jul, 2025 Reviewers agreed at journal 29 Jun, 2025 Reviewers invited by journal 02 Jun, 2025 Editor assigned by journal 21 Apr, 2025 Submission checks completed at journal 25 Mar, 2025 First submitted to journal 20 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6271582","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":465233212,"identity":"de5f3279-cdda-45a1-a89b-cf3d9f9be504","order_by":0,"name":"Marie 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Nantes","correspondingAuthor":false,"prefix":"","firstName":"Adrien","middleName":"","lastName":"Evin","suffix":""},{"id":465233220,"identity":"af235d03-9f4b-4e66-b067-22d09f82fe3b","order_by":8,"name":"Léonor Fasse","email":"","orcid":"","institution":"Université Paris Cité","correspondingAuthor":false,"prefix":"","firstName":"Léonor","middleName":"","lastName":"Fasse","suffix":""}],"badges":[],"createdAt":"2025-03-20 17:08:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6271582/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6271582/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00520-025-10074-y","type":"published","date":"2025-10-28T15:57:55+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":84199463,"identity":"69b985e6-10b4-457c-a4b4-85520202561d","added_by":"auto","created_at":"2025-06-09 08:15:56","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":58494,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eDendogram from the similarity analysis\u003cbr\u003e\n\u003c/strong\u003e\u003cem\u003eNote : This dendrogram groups words into conceptually similar clusters, showing how key themes emerged from the lexicometric analysis and how they interrelate\u003c/em\u003e\u003c/p\u003e","description":"","filename":"Picture1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6271582/v1/a09e65aac1b6d1e9c9066131.jpg"},{"id":95040653,"identity":"6f1ef2ef-8cc2-4c2b-b0d7-d1baac21b503","added_by":"auto","created_at":"2025-11-03 16:10:16","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1329394,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6271582/v1/556e082e-069d-4892-a607-2242231c027c.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Continuous deep sedation until death in terminal cancer : a lexicometric analysis of professional’s and relatives’ experience","fulltext":[{"header":"I-\tBackground","content":"\u003cp\u003eContinuous deep sedation (CDS) provides palliative relief from intractable suffering by inducing a state of coma until natural death occurs\u0026nbsp;(1). CDS practice is highly debated, especially regarding its proper use in end-of-life care. CDS is widely used,\u0026nbsp;particularly for terminally ill cancer patients,\u0026nbsp;but its frequency of application varies significantly, and its definition lacks consistency\u0026nbsp;(2,3). Indeed, based on previous studies regarding CDS, we can state that a significant proportion of patients for who this process is administered are patients with cancer (e.g. in France: 81%\u0026nbsp;(4)). Multiple guidelines exist regarding CDS practices\u0026nbsp;(5), but France is, for now, the only country to have legislated its use\u0026nbsp;(6). In 2016, the Claeys–Leonetti law granted terminally ill patients who refuse life-sustaining treatment the right to receive CDS until death (French National Authority for Health (HAS), 2020) Besides, this procedure is recognized to create a specific experiential context for both professionals implementing it and relatives supporting the patient\u0026nbsp;(7).\u003c/p\u003e\n\u003cp\u003eIndeed, palliative care clinicians encounter ethical concerns when practicing CDS. Primarily, they report having difficulty establishing a prognosis although they know it is a selection criterion for CDS\u0026nbsp;(8). Although CDS may be perceived by professionals as a « good way » to die, their emotional experience often includes a sense of responsibility and, at times, discomfort, stemming from a perception of hastening the patient’s death\u0026nbsp;(9). As a result, some healthcare professionals (HCPs) may hesitate to perform CDS, reflecting the reluctance care teams to engage in this practice. This hesitation partly arises from the moral reservations held by both the teams and the institutions, who consider CDS « morally pernicious » viewing its application as more focused on ending patient lives rather than alleviating unbearable suffering\u0026nbsp;(10).\u003c/p\u003e\n\u003cp\u003eOn the other hand, relatives are mostly appreciative of CDS as a palliative care option. As their priority is avoiding suffering at the end of life, they do not report any moral objection to this procedure\u0026nbsp;(11)\u0026nbsp;and believed sedation had contributed to a ‘good death’ for the patient\u0026nbsp;(12). However, some express concerns regarding the patient’s wellbeing and their own. These concerns often stem from fears that the patient might wake up or continue to experience suffering during sedation, the inability to interact with the patient after the start of sedation and the burdening feeling of responsibility for the decision to start sedation\u0026nbsp;(12,13). Additionally, studies highlight relatives’ questions about whether CDS may have shortened the patient’s life or whether an alternative approach might have been more appropriate. Some relatives also report a loss of agency, attributed to insufficient communication or inadequate information provided by healthcare professionals\u0026nbsp;(11).\u003c/p\u003e\n\u003cp\u003eAlthough the experiences of relatives and HCPs differ in their nature, they remain intrinsically linked by the shared context of CDS. Relatives' concerns about the patient’s comfort and potential ethical dilemmas often mirror the emotional and moral challenges faced by HCPs. For instance, 3 Dutch and Japanese studies concerning palliative sedation suggest that insufficient communication between HCPs and families not only exacerbates relatives' sense of helplessness but also increases professionals' feelings of accountability and ethical strain\u0026nbsp;(13–15). Conversely, when communication is transparent and collaborative, relatives report greater reassurance, while professionals experience reduced moral distress\u0026nbsp;(16). These findings underscore the mutual influence of these perspectives, emphasizing the importance of addressing both to refine the practice of CDS and alleviate the burden it imposes on all parties involved.\u003c/p\u003e\n\u003cp\u003eThe CDS experience among both relatives and HCPs are deeply interconnected and influence one another. Gaining insight into the dynamics between these perspectives can support the refinement of the procedure, ultimately helping to reduce the emotional and ethical burden associated with this complex process. Nevertheless, no studies have specifically examined the interaction between these perspectives, leaving a significant gap in understanding this interplay, even in France, where CDS holds a distinct status. \u0026nbsp;Hence, the aim of the current study was to explore and compare the perceptions and experiences concerning CDS. A lexicometric approach allows precisely this comparison and helps to reveal underlying emotional, cognitive and relational structures.\u003c/p\u003e"},{"header":"II-\tMethods","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eDesign and settings\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe current study is part of a larger research project (APSY-SED study), which investigates the psychological adjustment of relatives and healthcare professionals caring for cancer patients for whom CDS is considered. The APSY-SED study employs a mixed-methods design, combining semi-structured interviews with relatives and professionals, as well as psychological adjustment and satisfaction questionnaires. It follows a longitudinal protocol with data collection at three time points: Time 1 (the patient’s death), Time 2 (six months post-death), and Time 3 (thirteen months post-death). Conducted across ten centers in mainland France, the present study focuses specifically on the qualitative results collected at Time 1. The full study protocol has been published\u0026nbsp;(17).\u003c/p\u003e\n\u003cp\u003eThe qualitative interviews were conducted either in person or via videoconference (Zoom software) by four researchers in psychology, trained in research with bereaved individuals and HCPs (ML, CF, LF or NR). ML is a female PhD student in psychology, LF and CF are female associate professors in psychology with extensive experience in conducting research interviews, and NR is a male researcher in psychology. The researchers had no pre-existing clinical, therapeutic or professional relationship with the participants (relatives and HCPs).\u003c/p\u003e\n\u003cp\u003eThe interview prompt was as follows: 'Your relative received continuous deep sedation (for relatives)/ You were involved in implementing CDS (for HCPs). Could you tell me about your experience and how it unfolded for you?' Empathetic follow-up prompts or open-ended questions were used to explore participants' responses further in a non-directive manner.\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eStudy sample\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInclusion criteria consisted of: (1) patients aged ≥18 with terminal cancer (palliative phase), expected to die within hours or days, who either requested CDS or a hastened death, or who were unable to express wishes and for whom a medical decision to withdraw life-sustaining therapies had been made; (2) a collegial or multidisciplinary discussion confirming that CDS could be implemented according to French law; (3) at least one close relative (family member or friend) informed about the CDS option, with the possibility of including multiple relatives for the same patient; (4) at least one healthcare provider (HCP) involved in the patient’s care who agreed to participate; (5) HCPs (physicians, nurses, assistant nurses) directly engaged in the CDS procedure, defined as prescribing CDS (physicians) or providing daily care (nurses, assistant nurses); and (6) provision of non-objection by each participant upon reading the specific information letter.\u003c/p\u003e\n\u003cp\u003eExclusion criteria were: (1) relatives with a psychiatric disorder significantly distorting perception of reality (as determined by clinical staff); (2) insufficient fluency in French to complete questionnaires and research interviews; (3) patient death occurring before CDS implementation; (4) non-implementation of CDS despite a request; and (5) relatives under guardianship, deprived of liberty by judicial or administrative decision, or unable to provide non-objection.\u003c/p\u003e\n\u003cp\u003eThe contact details of relatives and HCPs from ten French palliative care unit involved in the APSY SED main study, were provided to the researcher by the physician in charge of the recruitment inside the unit. The participants received directly by the physician or were sent an e-mail with an information letter detailing the three times of the study and the first questionnaire (Time 1). They were then invited by e-mail or phone call to participate in an interview about their experience.\u003c/p\u003e\n\u003cp\u003eAmong the 26 HCPs and 51 relatives included in the study, qualitative interviews were conducted with 22 HCPs and 27 relatives. The interviews took place between January 2022 and June 2024 and lasted between 20 and 80 minutes. At the start of the interviews, participants were asked where they were (home or at workplace). Audio recordings were made using Zoom or a recorder.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eData analysis\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe recordings were transcribed and pseudonymized by ML. A lexicometric analysis was conducted using the Iramuteq software which is designed for analyzing text. Lexicometric analysis is the method of choice for comparing and contrasting two groups based on their discourse. \u0026nbsp;This analysis is based on the statistics of the corpus, meaning the study of the frequency of words and the relationships between them. The software first performs lemmatization, a process that reduces words to their base form (for example, 'dying' and 'dies' become 'die'). The corpus is then divided into Units of Context (UC), which are segments of text defined by the frequency of words and punctuation marks\u0026nbsp;(18).\u003c/p\u003e\n\u003cp\u003eFor the analysis, we first studied the statistics of the corpus, specifically focusing on the relative frequency of word occurrences. This allowed us to quantify how often specific words and themes appeared in the interviews, helping to identify patterns and the significance of certain UCs in the discourse. By examining these frequencies, we gained insights into the most prevalent topics addressed by the participants.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLexical specificity analysis was conducted using the Chi² test, with results standardized into Z-scores (adjusted residuals). These scores indicate the over- or under-representation of words within each group. Positive values denote a significant overuse of a term in a specific group, while negative values indicate its under-representation compared to the other group. A Z-score absolute value greater than 2 suggests a statistically meaningful difference in word usage. Then,\u0026nbsp;an analysis of specific forms was done using the Chi² test to determine whether certain words were significantly associated with a specific group. The Chi² values indicate the strength of association between a word and a group, while the p-value assesses the statistical significance of this association, with p \u0026lt; .05 considered the threshold for significance.\u0026nbsp;(19). Finally, hierarchical clustering was performed using Ward’s method to group words according to their similarity patterns ((20).\u003c/p\u003e\n\u003cp\u003eIn addition, a similarity analysis, measured by the co-occurrence index, was used to assess the relationships between words and which words are used together and their respective classes. The similarity analysis produces a dendogram illustrating the closeness of words in terms of content or language use. This approach allows us to examine the links between words and identify key words clusters in the data\u0026nbsp;(19).\u003c/p\u003e\n\u003cp\u003eLastly, we used the Descending Hierarchical Classification (DHC) method to generate word classes, where each class represents a cluster of words frequently occurring in the same or similar sentences spoken by participants. This method identifies clusters of words that are strongly associated with each other\u0026nbsp;(19).\u003c/p\u003e\n\u003cp\u003eThe Consolidated Criteria for Reporting Qualitative Research\u0026nbsp;(21)\u0026nbsp;were used.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEthics approval\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study received approval from a French Ethics Committee on 14/12/2021 (ID-RCB :2021-A03042-39), in accordance with the Declaration of Helsinki. All participants received information about the purpose and the procedures of the study before participating in this study.\u0026nbsp;\u003c/p\u003e"},{"header":"III- Results","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003e1. \u0026nbsp; \u0026nbsp;Sociodemographic Data\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study included 27 relatives (15 men, average age 50.1 years) and 22 healthcare professionals (15 women, average age 36.9 years), representing 53% of the total relatives sample and 85% of the total HCP sample. Participation in the qualitative interviews was voluntary rather than mandatory. Three interviews were subsequently deemed unusable, leaving the remaining interviews for final analysis. analysis Among the relatives, there were 18 adult children, 6 spouses of patients and 3 siblings. The professional group comprised 8 physicians and 6 nurses from five French hospitals (see table 1).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1 - Sociodemographic Characteristics of the Study Participants\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristic\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelatives\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n = 27)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealthcare Providers (n = 22)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAverage Age (Years)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e50.1 (SD = 15.03)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e36.9 (SD = 11.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelationship To Patient / Profession\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eChildren\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpouses\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSiblings\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhysicians\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNurses\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNursing Assistant\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eInstitutional Affiliation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e5 palliative care centers\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eSD = standard deviation\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e2. \u0026nbsp; \u0026nbsp;Statistical analysis \u0026ndash; frequencies of used forms\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u0026middot; \u003cstrong\u003e\u003cem\u003eRelatives\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe lexicometric analysis of interviews with relatives highlighted frequent references as indicated by high occurrences of terms. The word \u0026ldquo;moment\u0026rdquo; (used 301 times) emphasizes the temporality aspect of CDS which is experienced as a specific period of time \u0026ldquo;our last moment\u0026rdquo; who can be perceived as \u0026ldquo;serene\u0026rdquo; or \u0026ldquo;extremely difficult\u0026rdquo;. \u0026nbsp; \u0026nbsp;\u003cbr\u003eThe word \u0026ldquo;physician\u0026rdquo; (used 295 times) frequently appeared in participants\u0026rsquo; discourse, referencing communication between relatives and healthcare professionals, as well as the relationship with physicians, often described as \u0026ldquo;trusting the physician.\u0026rdquo; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cbr\u003e\u0026nbsp;The verb \u0026ldquo;to speak\u0026rdquo; (used 263 times) highlighted the central role of communication in the context of sedation, with contrasting nuances: \u0026apos;difficulty discussing it\u0026apos; versus \u0026ldquo;we had discussed it enough\u0026rdquo;.\u003cbr\u003eThe term \u0026ldquo;suffering\u0026rdquo; (used 226 times) was used to describe the patient\u0026rsquo;s condition prior to sedation, such as \u0026apos;my mother\u0026rsquo;s state of suffering,\u0026apos; and to frame sedation as a means to address it: \u0026ldquo;alleviate their suffering\u0026rdquo;, \u0026ldquo;relief from suffering\u0026rdquo;. \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003cbr\u003eThe word \u0026ldquo;sedation\u0026rdquo; (used 223 times) was often referenced as a request made by the patient\u0026mdash;\u0026apos;she requested sedation\u0026apos;\u0026mdash;and described as both a \u0026ldquo;relief\u0026rdquo; and \u0026ldquo;a form of violence.\u0026rdquo; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003cbr\u003e\u0026nbsp;Finally, the word \u0026ldquo;choice\u0026rdquo; (used 115 times) emphasized that this procedure originates from the patient\u0026rsquo;s decision\u0026mdash;\u0026quot;it was their choice\u0026rdquo;\u0026mdash;and highlighted the importance of respecting this decision: \u0026ldquo;I respected their choice\u0026quot;.\u003c/p\u003e\n\u003cp\u003e\u0026middot; \u003cstrong\u003e\u003cem\u003eHCPs\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe statistical analysis of the corpus highlights a predominant focus on the patient rather than on their relatives. Specifically, the term \u0026ldquo;patient\u0026rdquo; appears 236 times, placing the patient at the center of healthcare professionals\u0026rsquo; discourse. The patient is directly associated with terms such as \u0026ldquo;sedation\u0026rdquo; (178 occurrences) and \u0026ldquo;request\u0026rdquo; (102 occurrences).\u003c/p\u003e\n\u003cp\u003eHowever, this process is not without its challenges for professionals, as reflected by the use of the term \u0026ldquo;difficulties\u0026rdquo; (57 occurrences). Furthermore, terms like \u0026ldquo;alin\u0026eacute;a\u0026rdquo; in french (\u0026ldquo;paragraph\u0026rdquo;) (40 occurrences), referencing the Claeys-Leonetti law, as well as \u0026ldquo;procedure,\u0026rdquo; \u0026ldquo;rights\u0026rdquo; (24 occurrences), and \u0026ldquo;law\u0026rdquo; (24 occurrences) are frequently mentioned. This underscores the healthcare professionals\u0026rsquo; strong adherence to the legal framework governing CDS.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e3. \u0026nbsp; \u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003eLexical Specificities Analysis:\u003c/em\u003e\u003c/strong\u003e \u003cstrong\u003e\u003cem\u003edifferences between relatives and HCPs\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2: Lexical Specificities Analysis: Word Usage Differences Between Relatives and Healthcare Professionals\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eForms\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelatives\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHCPs\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eSuffering\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4.9556\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-4.9556\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eTo want\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4.7742\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-4.7742\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eAgreement\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4.4827\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-4.4827\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eDecision\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4.4096\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-4.4096\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eTo speak\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e4.0921\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-4.0921\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eTo choose\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e3.4479\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-3.4479\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eWish\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e3.2412\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-3.2412\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eRelentlessness\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e2.9307\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e-2.9307\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003ePatient\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-153.0255\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e153.0255\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eSedation\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-35.8805\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e35.8805\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Coll\u0026eacute;giale\u0026rdquo; (meeting)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-17.2542\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e17.2542\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eDifficulty\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-13.8262\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e13.8262\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eEuthanasia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-11.6981\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e11.6981\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eParagraph (ref. law)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-10.1787\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e10.1787\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eIntention\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-6.3008\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e6.3008\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eLegal\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e-6.0839\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e6.0839\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eComplicated\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.9681\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.9681\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003ePain\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.9579\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.9579\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eTime\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.9427\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.9427\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eDistress\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.6956\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.6956\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eInstant\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.6434\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.6434\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003ePhase\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.6398\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.6398\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eExchange\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.4051\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.4051\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 132px;\"\u003e\n \u003cp\u003e\u003cem\u003eProcess\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 131px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e0.4471\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 127px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e-0.4471\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote: Bolded entries indicate the group (Relatives or HCPs) in which each word is significantly overrepresented. The z-scores (in italics) reflect the strength of this association.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe analysis reveals notable lexical differences between the discourse of relatives and HCPs (Table 2). Certain words are strongly associated with relatives, reflecting their concerns, while others are predominantly used by HCPs, indicating their professional priorities. Additionally, some terms are relatively balanced and shared by both groups.\u003c/p\u003e\n\u003cp\u003eRelatives frequently use terms such as \u003cstrong\u003e\u0026quot;suffering\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;to want\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;agreement\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;decision\u0026quot;\u003c/strong\u003e, and \u003cstrong\u003e\u0026quot;to speak\u0026quot;\u003c/strong\u003e. These words suggest a focus on the pain of the patient, the expression of a choice to sedate, and active participation in decision-making processes. For example: \u003cem\u003e\u0026ldquo;We wouldn\u0026rsquo;t let her suffer\u0026rdquo;\u003c/em\u003e or \u003cem\u003e\u0026ldquo;We talked about it together and we always supported his decision.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe recurrent use of \u003cstrong\u003e\u0026quot;to choose\u0026quot;\u003c/strong\u003e and \u003cstrong\u003e\u0026quot;wish\u0026quot;\u003c/strong\u003e further highlights the importance of autonomy and emotional considerations in the relatives\u0026apos; discourse. The mention of \u003cstrong\u003e\u0026quot;relentlessness\u0026quot;\u003c/strong\u003e (referring as \u0026quot;therapeutic obstinacy\u0026quot;) indicates a critical perspective on perceived excessive medical interventions\u003cem\u003e: \u0026ldquo;He did not want therapeutic obstinacy\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eConversely, healthcare professionals employ a more technical and clinical vocabulary. Words such as \u003cstrong\u003e\u0026quot;patient\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;sedation\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;collegial\u0026quot;\u003c/strong\u003e, and \u003cstrong\u003e\u0026quot;euthanasia\u0026quot;\u003c/strong\u003e are central to their discourse. These terms reflect their professional responsibilities and the medical-ethical frameworks within which they operate. For instance: \u003cem\u003e\u0026ldquo;we do everything in a collegiate procedure\u0026rdquo;, \u0026quot;It\u0026apos;s not euthanasia at all\u0026quot;, and \u0026quot;I had trouble seeing the difference between sedation and euthanasia\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe frequent use of \u003cstrong\u003e\u0026quot;difficulty\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;intention\u0026quot;\u003c/strong\u003e, and \u003cstrong\u003e\u0026quot;legal\u0026quot;\u003c/strong\u003e suggests that professionals grapple with complex ethical, procedural, and legal dimensions when addressing end-of-life care. Words like \u003cstrong\u003e\u0026quot;alin\u0026eacute;a\u0026quot;\u003c/strong\u003e (a legal term) underline the formal context of their discussions \u003cem\u003e\u0026ldquo;it puts me in difficulty\u0026quot;, \u0026ldquo;clarified the intention\u0026rdquo;, \u0026ldquo;it\u0026rsquo;s not my intention\u0026rdquo; and \u0026ldquo;\u0026quot;meet the legal framework\u0026quot;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eInterestingly, some words are shared by both groups, albeit with slight variations in frequency or context. Terms like \u003cstrong\u003e\u0026quot;pain\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;time\u0026quot;\u003c/strong\u003e, \u003cstrong\u003e\u0026quot;distress\u0026quot;\u003c/strong\u003e, and \u003cstrong\u003e\u0026quot;exchange\u0026quot;\u003c/strong\u003e appear in both discourses, indicating common ground. These words reflect shared concerns about the patient\u0026apos;s experience and the relational dynamics between families and professionals. For example: \u003cem\u003eA relative \u0026ldquo;she started to be in pain\u0026rdquo; / a HCP \u0026ldquo;the patient\u0026rsquo;s pain\u0026rdquo; and A relative \u0026ldquo;to have time\u0026rdquo; / an HCP \u0026ldquo;we took the time\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOverall, the ward methods is indicating that the lexical distance between the two classes is close to zero (0.172).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e4. \u0026nbsp; \u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003eSpecific Forms Associated with Relatives and Healthcare Professionals\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3:\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eAnalysis of Specific Forms by Group\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 119px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eForms\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eChi2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eP value\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 119px;\"\u003e\n \u003cp\u003e\u003cem\u003eRelatives\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eFatigue\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e24.525\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eAgreement\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e35.148\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eTo speak\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e49.17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e.002\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"9\" valign=\"top\" style=\"width: 119px;\"\u003e\n \u003cp\u003e\u003cem\u003eHCPs\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003ePatient\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e145.633\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eSedation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e92.645\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eColl\u0026eacute;giale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e22.126\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eDifficulty\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e30.481\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eEuthanasia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e45.719\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e\u0026lt;.0001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eParagraph (ref. law)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e14.459\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e.00041\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eIntention\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e8.293\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e.00397\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eLegal\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e14.546\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e.00013\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 136px;\"\u003e\n \u003cp\u003eComplicated\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 89px;\"\u003e\n \u003cp\u003e4.599\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 107px;\"\u003e\n \u003cp\u003e.03\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote: Only words with a statistically significant association (p \u0026lt; .05) to one of the two groups are listed. The Chi\u0026sup2; value reflects how strongly each word is linked to either Relatives or HCPs.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSeveral terms are particularly characteristic of the discourse of relatives such as \u003cstrong\u003e\u0026quot;Fatigue\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 24.525, p \u0026lt; .0001), highlighting its centrality in their vocabulary. \u003cstrong\u003e\u0026quot;Agreement\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 35.148, p \u0026lt; .0001) and \u003cstrong\u003e\u0026quot;To speak\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 49.17, p = .002) emerges as highly specific terms, reflecting themes of communication and consensus.\u003c/p\u003e\n\u003cp\u003eHealthcare professionals, on the other hand, use a distinct set of terms more frequently. \u003cstrong\u003e\u0026quot;Patient\u0026quot;\u003c/strong\u003e is by far the most specific to this group, with an exceptionally high Chi\u0026sup2; value (145.633, p \u0026lt; .0001), underscoring its importance in their discourse. Words such as \u003cstrong\u003e\u0026quot;Sedation\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 92.645, p \u0026lt; .0001) and \u003cstrong\u003e\u0026quot;Coll\u0026eacute;giale\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 22.126, p \u0026lt; .0001) point to professional practices and collaborative decision-making. Legal and ethical concerns are reflected in terms such as \u003cstrong\u003e\u0026quot;Euthanasia\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 45.719, p \u0026lt; .0001), \u003cstrong\u003e\u0026quot;Paragraph\u0026quot;\u003c/strong\u003e (referring to specific legal contexts, Chi\u0026sup2; = 14.459, p = .00041), \u003cstrong\u003e\u0026quot;Intention\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 8.293, p = .00397), and \u003cstrong\u003e\u0026quot;Legal\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 14.546, p = .00013). The word \u003cstrong\u003e\u0026quot;Complicated\u0026quot;\u003c/strong\u003e (Chi\u0026sup2; = 4.599, p = .03) also highlights the complexity of professional decision-making. (Table 3)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e5. \u0026nbsp; \u0026nbsp;Relatives\u0026rsquo; similarity analysis\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe similarity analysis revealed several words clusters shown in the dendogram (Figure 1):\u003c/p\u003e\n\u003cp\u003e1. \u003cstrong\u003eTemporality (green)\u003c/strong\u003e: Discussions centered on time management and perceptions of care delivery.\u003c/p\u003e\n\u003cp\u003e2. \u003cstrong\u003eSuffering and Sedation (purple)\u003c/strong\u003e: Narratives focused on end-of-life practices and the alleviation of suffering.\u003c/p\u003e\n\u003cp\u003e3. \u003cstrong\u003eDecision-Making (light blue)\u003c/strong\u003e: Relatives emphasized the complexity of medical decisions and their involvement in these processes.\u003c/p\u003e\n\u003cp\u003e4. \u003cstrong\u003eCollective Organization (blue)\u003c/strong\u003e: The role of healthcare teams and logistical considerations were recurrent themes.\u003c/p\u003e\n\u003cp\u003e5. \u003cstrong\u003eFamily Relationships (red)\u003c/strong\u003e: Emotional dynamics and caregiving within the family were highlighted.\u003c/p\u003e\n\u003cp\u003e6. \u003cstrong\u003eDaily Planning (pink)\u003c/strong\u003e: Relatives addressed the day-to-day management of care.\u003c/p\u003e\n\u003cp\u003e7. \u003cstrong\u003eDeath and Broader Reflection (yellow)\u003c/strong\u003e: Philosophical and subjective discussions about mortality and end-of-life care emerged.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e6. \u0026nbsp; \u0026nbsp;Healthcare Professionals\u0026rsquo; descending hierarchical classification (DHC)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe DHC identified three key thematic areas for healthcare professionals. First, \u003cstrong\u003eMedical and Team Decision-Making:\u0026nbsp;\u003c/strong\u003eProfessionals emphasized the collective nature of the process, with frequent references such as \u0026ldquo;sedation is a team procedure\u0026rdquo; and \u0026ldquo;the collegial procedure really helps.\u0026rdquo; These statements reflect their focus on adhering to legal frameworks and respecting patients\u0026apos; rights. Then, \u003cstrong\u003eFamily Involvement and Communication:\u0026nbsp;\u003c/strong\u003eAnother central theme revolved around communication with families and involving them in decision-making. Examples include statements like \u0026ldquo;we talked to the family\u0026rdquo; and \u0026ldquo;accompany the family,\u0026rdquo; which highlight the professionals\u0026rsquo; acknowledgment of the relatives\u0026rsquo; emotions, as seen in quotes such as \u0026ldquo;the family was ready\u0026rdquo; and \u0026ldquo;it\u0026rsquo;s hard for the family.\u0026rdquo; Finally, \u003cstrong\u003eCDS and End-of-Life Challenges:\u0026nbsp;\u003c/strong\u003eThe final theme focused on continuous deep sedation (CDS) itself and broader end-of-life aspects. Sedation was often linked to the \u0026ldquo;patient\u0026rsquo;s desire to die,\u0026rdquo; while healthcare professionals expressed the emotional and ethical burden it placed on them, with remarks like \u0026ldquo;it puts me in too much difficulty.\u0026rdquo; Additionally, professionals noted that patients sometimes requested \u0026ldquo;active aid in dying,\u0026rdquo; which was associated with terms such as \u0026ldquo;difficulties\u0026rdquo; and \u0026ldquo;prohibited.\u0026rdquo;\u003c/p\u003e"},{"header":"IV- Discussion\t","content":"\u003cp\u003eThis study explores the experiences of CDS from the perspectives of cancer patients' relatives and HCPs. Using lexicometric analysis, we examine their perceptions, interactions, and emotional responses. Understanding these subjective experiences is crucial for adapting care environments to both individual and shared needs.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRegarding the relatives’ discourse, several key themes emerged. Temporality was a significant part, highlighting the importance of the last moment being lived. Ambivalence toward sedation was also central, as relatives viewed it as both a relief and a source of emotional pain for them. Participation in decision-making was another major theme, with a strong emphasis on paying respect to patient’s autonomy and wishes. Communication with HCPs played a crucial role, as trust and open dialogue were essential components of their experience.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHCPs, on the other hand, demonstrated a strong focus on the care of the patient. Their role involved balancing patient autonomy with ethical and legal frameworks. Organizational and procedural concerns, alongside ethical strain, were prominent in their preoccupations, with decision-making often described as challenging. Communication with families was also a key area of focus, highlighting its importance in the overall process.\u003c/p\u003e\n\u003cp\u003eOur findings align with existing literature. CDS is perceived as a means to ensure a “good death”\u0026nbsp;(11,12). Indeed, CDS has been associated with fewer unresolved issues, or \"unfinished business\". The sedation process allows relatives to anticipate the moment of death and a ritualization of goodbyes. Resolving \"unfinished business\" can be seen as a way for relatives to address disrupted attachment bonds, allowing them to process the loss within a framework of emotional stability and continuity. This may support meaning-making by helping relatives process death through reconstructing a narrative that integrates the loss into a broader existential framework\u0026nbsp;(22). This process can also be understood in light of anticipating death, a phase in which relatives become acutely aware of the patient’s decline and emotionally prepare for the loss while still maintaining a connection with the dying person\u0026nbsp;(23). The ability to prepare for death has been shown to significantly impact post-loss adjustment\u0026nbsp;(24), and CDS, by providing a structured end-of-life period, might play a role in this anticipatory grieving process. Moreover, emphasizing patient autonomy enables relatives to integrate the patient’s wishes into their narrative of the dying process, fostering a sense of coherence and respect to patient identity. The relief provided by CDS supports meaning-making by alleviating not only the patient’s suffering but also relatives’ emotional burden, helping them construct a narrative of humanization and care around the patient’s final moments. Hence, CDS might influence grief processing by shaping how families experience and integrate the loss. For relatives, our results show that temporality is deeply rooted in subjective and emotional experiences, with a strong emphasis on the significance of the “last moments.” This aligns with existing literature. For example,\u0026nbsp;(25)\u0026nbsp;noted that “several relatives mentioned that the use of palliative sedation provided them with the time necessary to prepare for the loss of their loved one. They knew that death was near and could say goodbye to the patient in a conscious way.” The focus on \"last moments\" highlights the importance of seeking meaningful closure to preserve these connections. As found in the literature, this sense of anticipation also leads to a heightened need for emotional engagement with the dying person. As the patient becomes sedated and verbal communication ceases, relatives often reinforce their dedication, intensifying the relationship through non-verbal presence, physical touch, and the completion of end-of-life relational tasks such as reviewing life events, sharing meaningful experiences, and resolving unfinished conflicts\u0026nbsp;(23).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConversely, relatives reported tensions surrounding sedation duration, which could be perceived in conflicting ways as either long and exhausting or as calming and appropriate. When sedation was considered too prolonged, relatives often described feelings of fatigue and emotional exhaustion\u0026nbsp;(26).\u0026nbsp;Imai et al., (2022)\u0026nbsp;observed that families of patients who underwent CDS frequently expressed concerns that the dying process had been unnaturally extended. However, when the process felt too rapid, fears of euthanasia arose, reflecting the delicate emotional balance associated with timing. This paradox resonates with findings that, while terminality is expected, it is often still perceived as sudden and emotionally overwhelming\u0026nbsp;(23). Indeed, some relatives ultimately experience a sense of relief after a prolonged and emotionally intense caregiving period, recognizing that death has ended both the patient’s suffering and their own burden.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur findings on HCPs also align with existing literature, as the preoccupation with decision-making is well-documented in the literature.\u0026nbsp;Brinkkemper et al., (2011)\u0026nbsp;found that 18.5% of HCP respondents believed that CDS was not started at the right moment, but either too soon or too late. Furthermore,\u0026nbsp;Guité-Verret et al., (2024, p6)\u0026nbsp;highlighted the weight that clinicians place on prognostic accuracy: “Clinicians recognized the importance of making an accurate prognosis as a crucial aspect of providing quality continuous sedation, but errors in timing, whether administering continuous sedation too early or too late, can result in a sense of professional and, to some extent, personal failure”. This difficulty can also be partly explained by the moral and ethical complexity of the practice, particularly the need to balance patient autonomy with the legal and ethical frameworks that govern end-of-life care.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOne of the major concerns for HCPs, as observed in this study and others, is the need to clearly distinguish CDS from physician-assisted death\u0026nbsp;(28–30). This distinction is critical, as CDS is designed as a palliative intervention aiming at reducing refractory suffering, rather than a life-ending measure, and HCPs may feel heightened pressure to ensure that their actions remain within legal boundaries and ethical standards. The Claeys-Leonetti French law (2016) offers a legal framework that HCPs rely on to clarify their intentions and guide their actions, which helps mitigating ethical uncertainty. \u0026nbsp;HCPs may experience cognitive dissonance\u0026nbsp;(31), when their internal desire to alleviate suffering\u0026nbsp;(8)\u0026nbsp;interacts with societal or institutional expectations regarding the acceptability of CDS. Adhering strictly to laws and guidelines can reduce this dissonance, providing a sense of moral justification and coherence to their actions. In this sense, the legal framework serves as a moral anchor, helping professionals align their actions with both their personal values and professional responsibilities\u0026nbsp;(30).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe theme of “suffering” is prominently shared by both relatives and healthcare professionals (HCPs), though approached from distinct perspectives. For relatives, alleviating the patient’s suffering emerges as a central concern, often representing a turning point during the dying process. This aligns with the existing literature, where sedation is perceived as a relief\u0026nbsp;(32). However, relatives’ experiences of sedation also evoke ambivalence, with it being described as both a relief and a form of violence, reflecting the emotional burden associated with this procedure. A study found that relatives expressed feelings that the trajectory of sedation was deeply distressing for them\u0026nbsp;(26). Yet, positive aspects were also highlighted in the literature, including the opportunity to prepare for the patient’s death, involvement in decision-making, and the improvement in the patient’s condition\u0026nbsp;(32).\u0026nbsp;For HCPs, their ambivalence is evident in their strong reliance on ethical guidelines and their need for absolute certainty that CDS is appropriate. Their framing of CDS as a necessary medical response reflects their procedural focus, but it also underscores their shared goal of alleviating suffering. However, while HCPs emphasize CDS as a last-resort measure\u0026nbsp;(33), relatives often seek immediate relief for the patient, leading to potential tension. Bridging these perspectives requires clearer communication and, if the patient consents, earlier integration of relatives into the decision-making process.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAdditionally, the importance of the relationship with HCPs is consistent with studies showing relatives’ strong need for guidance and appreciation of the support offered by HCPs\u0026nbsp;(14,26). Indeed, communication and relational tact seem to be major prerequisites for peaceful CDS. In fact a study focusing on relatives’ concerns showed that their dissatisfaction was mainly associated with the information that was being provided \u0026nbsp;(Van Dooren et al., 2009). Attachment theory may provide insight into this need, as the end-of-life context can activate the attachment system. In such situations, relatives seek secure relationships with HCPs, who can provide a sense of safety and support.\u003c/p\u003e\n\u003cp\u003eA notable strength of this research is its dual focus on the perspectives of both family members and healthcare professionals, allowing for richer, comparative insights into how each group experiences CDS. The lexicometric approach quantifies language use, providing a nuanced and measurable view of participants’ discourse about sedation. By coupling a quantitative analysis of word usage with a qualitative examination of participants’ subjective experiences, the study thoroughly captures and contrasts the viewpoints of all parties involved.\u003c/p\u003e\n\u003cp\u003eThe present study presents several limitations. Although the relatives in this study held diverse roles (e.g., spouses, siblings), most were children of the patients, which limits the sample’s diversity and representativeness. One limitation of the lexicometric analysis is that it remains very close to the text, focusing primarily on word frequency and co-occurrence patterns rather than deeper interpretative meaning. While this method provides valuable insights into linguistic structures and recurring themes, it does not fully capture the complexity of participants' experiences or the nuanced ways in which they construct meaning. To gain a more in-depth understanding, complementary approaches such as thematic analysis\u0026nbsp;(34,35)\u0026nbsp;or interpretative phenomenological analysis (IPA,\u0026nbsp;Smith \u0026amp; Osborn, 2003)\u0026nbsp;could be employed. These methods would allow for a more detailed exploration of the underlying concepts, subjective experiences, and sense-making processes articulated by participants.\u003c/p\u003e\n\u003cp\u003eTo improve the experience of relatives facing CDS, it seems essential to develop clear and structured programs that provide comprehensive explanations of what sedation entails, how it works, and what to expect throughout the process (11). In the face of unavoidable uncertainty, prioritizing communication could help alleviate potential distress related to misconceptions or unanswered questions. Moreover, psychological support should be integrated throughout the entire CDS process, not as an isolated intervention, but as a resource embedded in the daily lives of relatives. This means offering flexible, accessible, and time-efficient support that does not add an extra burden or disrupt their routine. Instead of lengthy, formal sessions, means of support could include short, regular check-ins, personalized guidance adapted to their needs, and opportunities to express concerns in a way that feels natural and non-intrusive (37,38). By combining structured education with embedded psychological help, we can ensure that relatives feel both informed and emotionally supported, ultimately improving their coping process and overall experience during this challenging time.\u003c/p\u003e\n\u003cp\u003eFor HCPs involved in CDS, providing clear legal and ethical guidance is crucial to enlighten their decision-making process and reduce moral distress (39). As the Claeys-Leonetti law allows, structured frameworks should deliver precise criteria for CDS implementation, clarifying the boundaries between palliative sedation and other end-of-life practices. This would help professionals feel more secure in their role and ensure consistency in care delivery. Additionally, team-based support should be reinforced, including intervision sessions where professionals can openly discuss complex cases, share uncertainties, and reflect on their experiences in a collaborative and non-judgmental environment (40). These discussions could help mitigate the emotional burden associated with CDS and prevent burnout.\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u003c/strong\u003e Oral and written information about the study was given to each participant. This study was approved by the French Ethics Committee on 14/12/2021 (ID-RCB :2021-A03042-39). In accordance with French regulations, participants were informed about the study and data collection procedures. Non-opposition to participation was obtained from all participants, and written informed consent was not required for this type of non-interventional study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u003c/strong\u003e Data are available on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u003c/strong\u003e The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e This study is funded by the French National Cancer Institute (INCa SHS 2020)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u003c/strong\u003eLF is responsible for study design and participated in data collection and in manuscript preparation. CF participated in study design, data collection and manuscript preparation. ML is responsible for data collection and analysis and manuscript preparation. \u0026nbsp;AP, AE, IJ, CP, CM and NR participated in data collection and manuscript preparation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e: The authors would like to thank all the patients, their relatives, physicians and other healthcare workers involved in this research.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eCherny NI, Radbruch L. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 1 oct 2009;23(7):581‑93.\u003c/li\u003e\n\u003cli\u003eAbarshi E, Rietjens J, Robijn L, Caraceni A, Payne S, Deliens L, et al. International variations in clinical practice guidelines for palliative sedation: a systematic review. BMJ Support Palliat Care. 1 sept 2017;7(3):223‑9.\u003c/li\u003e\n\u003cli\u003ePrampart S, Huon JF, Colpaert A, Delavaud C, Nizard J, Evin A. Deep continuous sedation at the patient\u0026rsquo;s request until death in a palliative care unit: retrospective study. BMJ Support Palliat Care. 21 f\u0026eacute;vr 2024;14(1):60‑4.\u003c/li\u003e\n\u003cli\u003eSerey A, Tricou C, Phan-Hoang N, Legenne M, Perceau-Chambard \u0026Eacute;, Filbet M. Deep continuous patient-requested sedation until death: a multicentric study. BMJ Support Palliat Care. mars 2023;13(1):70‑6.\u003c/li\u003e\n\u003cli\u003eSurges SM, Brunsch H, Jaspers B, Apostolidis K, Cardone A, Centeno C, et al. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study. Palliat Med. f\u0026eacute;vr 2024;38(2):213‑28.\u003c/li\u003e\n\u003cli\u003eHorn R. 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Perception, Beliefs, and Attitudes Regarding Sedation Practices among Palliative Care Nurses and Physicians: A Qualitative Study. Palliat Med Rep. 2021;2(1):160‑7.\u003c/li\u003e\n\u003cli\u003eVissers S, Dierickx S, Robijn L, Cohen J, Deliens L, Mortier F, et al. Physicians\u0026rsquo; Experiences and Perceptions of Environmental Factors Affecting Their Practices of Continuous Deep Sedation until Death: A Secondary Qualitative Analysis of an Interview Study. Int J Environ Res Public Health. 30 avr 2022;19(9):5472.\u003c/li\u003e\n\u003cli\u003eJonker LA, Heijltjes MT, Rietjens JAC, van der\u0026nbsp;Heide A, Hendriksen G, van\u0026nbsp;Delden JJM, et al. Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives. Health Expect. 2024;27(1):e13869.\u003c/li\u003e\n\u003cli\u003eBruinsma SM, Brown J, van der\u0026nbsp;Heide A, Deliens L, Anquinet L, Payne SA, et al. 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[Rotterdam]: Erasmus Universiteit Rotterdam (EUR); 2015.\u003c/li\u003e\n\u003cli\u003eVan Dooren S, Van Veluw HTM, Van Zuylen L, Rietjens JAC, Passchier J, Van Der Rijt CCD. Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer. J Pain Symptom Manage. sept 2009;38(3):452‑9.\u003c/li\u003e\n\u003cli\u003eBrinkkemper T, Klinkenberg M, Deliens L, Eliel M, Rietjens JAC, Zuurmond WWA, et al. Palliative sedation at home in the Netherlands: a nationwide survey among nurses: Palliative sedation at home. J Adv Nurs. mars 2011;67(8):1719‑28.\u003c/li\u003e\n\u003cli\u003eAuffray L, Mora P, Giabicani M, Engrand N, Audibert G, Perrigault PF, et al. Tension between continuous and deep sedation and assistance in dying: a national survey of intensive care professionals\u0026rsquo; perceptions. Anaesth Crit Care Amp Pain Med. f\u0026eacute;vr 2024;43(1):101317.\u003c/li\u003e\n\u003cli\u003eKoksvik GH, Richards N, Gerson SM, Materstvedt LJ, Clark D. Medicalisation, suffering and control at the end of life: The interplay of deep continuous palliative sedation and assisted dying. Health Interdiscip J Soc Study Health Illn Med. d\u0026eacute;c 2020;26(4):512‑31.\u003c/li\u003e\n\u003cli\u003eLucchi E, Milder M, Dardenne A, Bouleuc C. Could palliative sedation be seen as unnamed euthanasia?: a survey among healthcare professionals in oncology. BMC Palliat Care [Internet]. juill 2023;22(1). Disponible sur: http://dx.doi.org/10.1186/s12904-023-01219-z\u003c/li\u003e\n\u003cli\u003eFestinger L. A theory of cognitive dissonance. Stanford University Press; 1957. xi, 291 p. (A theory of cognitive dissonance).\u003c/li\u003e\n\u003cli\u003eBruinsma S, Rietjens J, van der\u0026nbsp;Heide A. Palliative Sedation: A Focus Group Study on the Experiences of Relatives. J Palliat Med. avr 2013;16(4):349‑55.\u003c/li\u003e\n\u003cli\u003eSwart SJ, van der\u0026nbsp;Heide A, van\u0026nbsp;Zuylen L, Perez RSGM, Zuurmond WWA, van der\u0026nbsp;Maas PJ, et al. Continuous Palliative Sedation: Not Only a Response to Physical Suffering. J Palliat Med. janv 2014;17(1):27‑36.\u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Supporting best practice in reflexive thematic analysis reporting in Palliative Medicine: A review of published research and introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG). Palliat Med. juin 2024;38(6):608‑16.\u003c/li\u003e\n\u003cli\u003ePaill\u0026eacute; P, Mucchielli A. L\u0026rsquo;analyse qualitative en sciences humaines et sociales [Internet]. Armand Colin; 2012 [cit\u0026eacute; 12 f\u0026eacute;vr 2025]. Disponible sur: https://shs.cairn.info/l-analyse-qualitative-en-sciences-humaines--9782200249045\u003c/li\u003e\n\u003cli\u003eSmith JA, Osborn M. Interpretative phenomenological analysis. In: Qualitative psychology: A practical guide to research methods. Thousand Oaks, CA, US: Sage Publications, Inc; 2003. p. 51‑80.\u003c/li\u003e\n\u003cli\u003eHill R, Dempster M, Donnelly M, Mccorry N. Improving the wellbeing of staff who work in palliative care settings: A systematic review of psychosocial interventions. Palliat Med. 1 oct 2016;30:825‑33.\u003c/li\u003e\n\u003cli\u003eHudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients. J Palliat Med. juin 2012;15(6):696‑702.\u003c/li\u003e\n\u003cli\u003eZiegler S, Merker H, Schmid M, Puhan MA. The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals\u0026rsquo; emotional well-being: a systematic review. BMC Palliat Care. 8 mai 2017;16:30.\u003c/li\u003e\n\u003cli\u003eAnquinet L, Rietjens J, van der\u0026nbsp;Heide A, Bruinsma S, Janssens R, Deliens L, et al. Physicians\u0026rsquo; experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life. Psychooncology. mai 2014;23(5):539‑46.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-6271582/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6271582/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eIntroduction : Continuous deep sedation (CDS) provides palliative relief for intractable suffering, especially in the context of cancer. This procedure is recognized to create a specific experiential context for both professionals implementing it and relatives supporting the patient. The aim of the current study was to explore and compare the perceptions and experiences concerning CDS.\u003c/p\u003e\n\u003cp\u003eMethods : The APSY-SED study is a multicenter, prospective, and longitudinal study using a mixed-methods design. We present here the qualitative results derived from a lexicometric analysis of interviews conducted with relatives and healthcare professionals at T1 (when CDS is initiated).\u003c/p\u003e\n\u003cp\u003eResults : The study included 27 relatives and 22 healthcare professionals. Relatives stressed the finality of time, experiencing sedation with ambivalence: both as a relief for the patient and a source of emotional burden for themselves. They highlighted the importance of respecting patient autonomy and wishes, with strong emphasis on communication and trust in healthcare professionals. Meanwhile, professionals focused on patient care, balancing ethical and legal considerations while upholding patient autonomy. They noted practical and procedural strains around decision-making and underscored the essential role of family communication throughout the sedation process.\u003c/p\u003e\n\u003cp\u003eDiscussion : These findings underscore the complexity of CDS, revealing the nuanced interplay between relatives’ ambivalence and healthcare professionals’ ethical concerns. Communication clearly emerges as a pivotal element in reconciling these perspectives, particularly around patient autonomy, family involvement, and shared decision-making. Clear legal and ethical guidelines can reduce professionals’ moral distress, and structured education programs for relatives may improve their experience of sedation care.\u003c/p\u003e","manuscriptTitle":"Continuous deep sedation until death in terminal cancer : a lexicometric analysis of professional’s and relatives’ experience","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-09 08:15:51","doi":"10.21203/rs.3.rs-6271582/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-08-05T17:01:54+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-01T14:27:26+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"85255001982612722062739186917163595748","date":"2025-06-29T08:24:15+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-06-02T11:59:16+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-04-21T19:14:57+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-03-25T23:20:50+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2025-03-20T17:01:51+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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